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There is no evidence that the "typical" ME patient exists. This overworked, driven stereotype was invented by the BPS brigade and then this information was spread by the media. Then they added insult to injury with the term "yuppie flu". ME affects all genders, social & economic classes and...

I am not on Facebook, but I disagree. I don't see why people on this thread and this forum should have to self moderate comments and criticism of the MEA or Dr Shepherd because of the behaviour of Facebook members. Just because it's discussed there doesn't mean we can't discuss it here as...

Both sides can call on expert witnesses though. The longer this goes on the more evidence will be stacked against them. I'm not saying we'd win a case today or even tomorrow, but the day will come.

I know people, in the UK health service in particular, who had this happen. A pharmacist friend in particular. She worked in a hospital pharmacy. When she was first diagnosed they were supportive for about a month. Then people complained about favouritism and suddenly she was being out on...

I absolutely and completely respect your right to find whatever silver linings you may. I am firm believer that if you can't change things you may as well make the best of them and have the utmost respect for those who can. Nobody, has the right to tell anyone else to do so. For a charity...

Good grief! i wonder what their definition of recovery is? How do they distinguish between remission and recovery? How do they know that remission/recovery wasn't just coincidental? This strikes me as incredibly cruel. Anyone's pet theory foisted on the vulnerable, rubber stamped by...

I agree, but I also wonder how much is down to stress and how much is down to having ME. For example, it takes much more energy for me to accomplish a task on a bad and on a good (or less bad!) day. It takes much more energy than it would have taken me when well. Then we have the double...

Exactly. That's what I meant but JE said it better. That's the craziness if our situation. We end up asking for second best treatment, or even none at all, because our condition has been hijacked.

Yep. I agree. However, even a sympathetic GP simply doesn't have the time, education or the expertise to manage ME patients in my view. Specialist clinics (I mean ones that are actually fit for purpose mind - not CFS ones) can do a lot more to help patients get and stay as well as possible...

I think they may well be stepping on the edge of thin ice here. One could argue that PACE demonstrated that CBT (directive for ME) doesn't really work. It is now on open record (thanks to forums like this one) that patients haven't found it helpful, have sometimes found it harmful and had...

Not only has ME caused me to have to split from some family members, lose friends it has also left me too unwell to have children. I might have been physically able to produce one, but certainly not capable of looking after it and because of the rift caused by ME I wouldn't have had wider...

Experts should be held accountable for their publicly given advice. They'd be far less free with it. I have two close relatives who had hip replacements over a decade apart. Patient 1 an early 40s non smoker and patient 2 a mid 30s smoker. Patient 1 had quite a few days rest whereas Patient 2...

I've just read the abstract, but from that it sounds to me like those nurses were "frontline" staff. A&E, walk-in clincs, that type of thing. This means they will be in close proximity to a higher number of people throughout the day and will spend their working day in a work area that has a...

I was put on a strict exclusion diet to try to work out allergies. I can't remember now exactly how long I was supposed to be on it, but my weight plummeted and I was taken off it early - possibly 4 weeks in. I was still eating 3 meals a day plus snacks.

Oooh, that sounds handy. Much better than the stuff I have to keep applying after contact. Touching the outside if the bottle, your handbag if you forgot to slip it in a pocket first...

I quite agree. I have a little bottle of hand sterilizer in my bag for when I for out. Nothing to do with coronavirus, just coughs and colds. No matter where I go, it seems someone is lurking specifically foe the purpose of having a coughing and spluttering fit as I go past. :cautious: Lots...

Even if resting, I have to eat a little and often. I have some gastric issues that may or may not be related to ME that causes problems if I eat too much in one sitting, or eat too quickly. I have regular little snacks mid-morning, mid afternoon and 2 in the evening. In addition to lunch and...

It depends what you mean by fad - yes, the surgery has been around for a while. It is the sudden attention to it that may appear as a fad to some. I deliberately didn't refer to any one individual in my post because it wasn't aimed at Jenny or any one else in particular. For the last 20 +...

What could possibly go wrong? :rolleyes:

I can't either. If I don't eat regularly I start to feel extremely ill. This has happened since developing ME.